Be Prepared
As soon as I knew that I was going to have to get a double mastectomy, I started researching what kinds of supplies and planning would be needed for a smooth recovery. I did a lot of Google and Pinterest searches, and asked my sister (who had gone through the surgery earlier that year). The internet provided sources with short lists, and a lot of repetitive information between them. So here are my recommendations for a few things to make recovery easier.
1. Build your nest.
If you want any sort of independence after surgery, build an area in your home where small things you may need are in reach. And by "reach", I mean set it up like you are a T-Rex. I wasn't be able to lift heavy objects or even fully extend my arms without some discomfort. Heck, sitting up was a feat, since I came out of surgery with 4 drains and two lines from my pain pump. I had to make sure any movement I made didn't pull on any of the 6 tubes coming out of my body. I set up my nest on the couch. Going to and from the bedroom to sleep was unnecessary work, and rolling out of bed was painful. Also, I didn't really have a set sleep cycle for at least the first week. By weeks 2-3, I settled with a schedule of taking a long nap in the middle of the day, and being awake for a few hours in the middle of the night. By staying on the couch, I didn't have to move any of my supplies- which would have been very difficult. I had it set up so I barely had to move to reach the remotes, my cell phone, books, my iPad, my medications, and snacks and drinks.
2. Anything in the home that you may need to reach, move it down to waist level.
Arm range of motion after a mastectomy can take a long time to get back to normal. I wasn't supposed to do any major arm exercises until my drains were out, which was 3-4 weeks! So even though I was able to shuffle around well, I still couldn't reach above my head. Take a look at your kitchen, if you will need anything from a cabinet higher than your shoulders, make a pile on your counter instead. In my closet, I took down any shirts I might wear and placed them on a dresser. It is is amazing how defeated you feel when you can't reach something a few inches above your head.
3. Take people up on their offer to help, if you feel comfortable with it.
I don't know how I would have gotten through recovery without my husband around. He helped with all the personal details- emptying drains, showering, getting dressed. He still had to return to work, and he could feel overwhelmed with his job, the housework, the dog, and taking care of me. For the first few weekends, I had people come and visit. Even though my husband was off on weekends, it allowed him to sleep in. My family and friends would cook or order food, clean the kitchen, take the dog out. Neither my husband nor I would have wanted people around 24/7, but it did help cut down on stress, and helped change up the monotony of my recovery.
Check to see if there are any services in your area that can help during your recovery. In my area, there is an amazing group called the Pink Ribbon Girls (https://www.pinkribbongirls.org/). It is a free service for women undergoing breast cancer treatments. They offer rides to and from hospital visits and doctors appointments, they can help provide a few meals, and some will even visit your home to help with housework. I didn't need this service, but I can't imagine how helpful it must be to women who don't have the help that I did.
Don't be afraid to say no, or give people alternative ways to help. There were plenty of people I didn't necessarily want to see during my recovery, and some I would have liked to see who wouldn't be able to visit me. I set up an Amazon.com wish list and posted it on my Facebook. It was a great way for me to save money on supplies, and give people a way to contribute. I received items from people I hadn't seen in person for years. The support was overwhelming.
4. Set-up your bathroom
The bathroom struggle is real. Going to the bathroom after surgery isn't pretty. Reaching the toilet paper attached to the sink next to me was hell for the first week. And (I will be grossly honest with you here), with all the tubing and my inability to move my core much, it was difficult to wipe, especially after going #2. Since my sister was honest with me about the bathroom struggle, I had set up a table as close to the toilet as I could place it without blocking the toilet. I placed toilet paper, maxi pads, and sanitary wipes within reach. I really didn't want to need my husband to help me when it came to using the toilet, and that table was how I kept my independence.
Consider getting a detachable shower head and a shower stool. My husband helped me shower for 3-4 weeks after the surgery. At first, just climbing into the bathtub wore me out, so sitting on the shower stool was a necessity. My husband would use the shower head to to help rinse me off, instead of sponge bathing. Taking a bath is not allowed while you have drains in, so your bathing options are limited. It took a lot of energy to shower, so I only did it every 2 days for a while. On the off days, I used shower wipes to wipe down my entire body, and did some small rinses of the skin where my drains were attached.
5. Miscellaneous supplies
Recovery is different for every body, so this list should be more of a guideline than a rule book. Follow your doctors orders, stay comfortable, sleep as much as you need, and always ask for help if you need it.
1. Build your nest.
If you want any sort of independence after surgery, build an area in your home where small things you may need are in reach. And by "reach", I mean set it up like you are a T-Rex. I wasn't be able to lift heavy objects or even fully extend my arms without some discomfort. Heck, sitting up was a feat, since I came out of surgery with 4 drains and two lines from my pain pump. I had to make sure any movement I made didn't pull on any of the 6 tubes coming out of my body. I set up my nest on the couch. Going to and from the bedroom to sleep was unnecessary work, and rolling out of bed was painful. Also, I didn't really have a set sleep cycle for at least the first week. By weeks 2-3, I settled with a schedule of taking a long nap in the middle of the day, and being awake for a few hours in the middle of the night. By staying on the couch, I didn't have to move any of my supplies- which would have been very difficult. I had it set up so I barely had to move to reach the remotes, my cell phone, books, my iPad, my medications, and snacks and drinks.
2. Anything in the home that you may need to reach, move it down to waist level.
Arm range of motion after a mastectomy can take a long time to get back to normal. I wasn't supposed to do any major arm exercises until my drains were out, which was 3-4 weeks! So even though I was able to shuffle around well, I still couldn't reach above my head. Take a look at your kitchen, if you will need anything from a cabinet higher than your shoulders, make a pile on your counter instead. In my closet, I took down any shirts I might wear and placed them on a dresser. It is is amazing how defeated you feel when you can't reach something a few inches above your head.
3. Take people up on their offer to help, if you feel comfortable with it.
I don't know how I would have gotten through recovery without my husband around. He helped with all the personal details- emptying drains, showering, getting dressed. He still had to return to work, and he could feel overwhelmed with his job, the housework, the dog, and taking care of me. For the first few weekends, I had people come and visit. Even though my husband was off on weekends, it allowed him to sleep in. My family and friends would cook or order food, clean the kitchen, take the dog out. Neither my husband nor I would have wanted people around 24/7, but it did help cut down on stress, and helped change up the monotony of my recovery.
Check to see if there are any services in your area that can help during your recovery. In my area, there is an amazing group called the Pink Ribbon Girls (https://www.pinkribbongirls.org/). It is a free service for women undergoing breast cancer treatments. They offer rides to and from hospital visits and doctors appointments, they can help provide a few meals, and some will even visit your home to help with housework. I didn't need this service, but I can't imagine how helpful it must be to women who don't have the help that I did.
Don't be afraid to say no, or give people alternative ways to help. There were plenty of people I didn't necessarily want to see during my recovery, and some I would have liked to see who wouldn't be able to visit me. I set up an Amazon.com wish list and posted it on my Facebook. It was a great way for me to save money on supplies, and give people a way to contribute. I received items from people I hadn't seen in person for years. The support was overwhelming.
4. Set-up your bathroom
The bathroom struggle is real. Going to the bathroom after surgery isn't pretty. Reaching the toilet paper attached to the sink next to me was hell for the first week. And (I will be grossly honest with you here), with all the tubing and my inability to move my core much, it was difficult to wipe, especially after going #2. Since my sister was honest with me about the bathroom struggle, I had set up a table as close to the toilet as I could place it without blocking the toilet. I placed toilet paper, maxi pads, and sanitary wipes within reach. I really didn't want to need my husband to help me when it came to using the toilet, and that table was how I kept my independence.
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| My toilet table: toilet paper, maxi pads, shower and sanitary wipes, febreeze, extra bandaging material, baby powder. I even placed baby oil and lotion so I could use them when I got out of the shower. |
Consider getting a detachable shower head and a shower stool. My husband helped me shower for 3-4 weeks after the surgery. At first, just climbing into the bathtub wore me out, so sitting on the shower stool was a necessity. My husband would use the shower head to to help rinse me off, instead of sponge bathing. Taking a bath is not allowed while you have drains in, so your bathing options are limited. It took a lot of energy to shower, so I only did it every 2 days for a while. On the off days, I used shower wipes to wipe down my entire body, and did some small rinses of the skin where my drains were attached.
5. Miscellaneous supplies
- Fold-out TV dinner tables: I used one in my bathroom for toilet supplies, and another two to help build my nest.
- Pillows: I used a mastectomy pillow as support for my back and chest, depending on my comfort that day. My sister recommended an airplane style neck pillow, because you basically have to sleep sitting up for the first couple of weeks (doctors orders). The neck pillow really helped keep me comfortable at night. We also kept a variety of different sized pillows around, which was so important for comfort for my arms, legs, and upper body.
- Comfortable clothes: forget pulling a shirt over your head for at least a month. Invest in button up or zip up shirts. Also make sure to have plenty of comfortable and stretchy pants. I couldn't bear to put on a pair of jeans for a while, so having some yoga pants made me feel comfortable and at least semi-presentable when I needed to go out.
- Drain pouches: the hospital gave me a vest and some pouches to put my drains into during recovery, but I'm not sure every hospital offers this. Consider investing in drain pouches or even a robe with pockets on the inside to keep the drains from tumbling all around your sides.
- Compression socks: to help decrease the chance of a blood clot after surgery, you won't be moving around much.
- Hand sanitizer and hand wipes: I used these before and after every meal, after petting the dog, and if I needed to adjust my skin around my drains. I was determined to not get an infection.
- Extra towels: cleanliness is a priority when emptying drains, so my husband and I were sure our hands were freshly washed and dried. We used a new hand towel each time, and had gotten some extra from out Amazon.com wish list. We had more laundry, but didn't have to wash small loads.
- Pill box: for the first couple of weeks, I didn't have the arm strength or mobility to open pill vials. It can also help you remember to take all your medications as prescribed.
- Drink tumblers: having extra tumblers allowed me to have a variety of drinks within reach, kept me from spilling more than a few times, and the straws attached meant I didn't have to angle the glass to drink (which was painful at first)
- Things to keep busy: recovery is a lot of down time and can be emotionally trying. I felt so useless, because I am used to being a productive person. People bought me crafts, coloring books, books, and I had subscriptions to Netflix, HBO, and Amazon Prime to watch TV and movies. The internet alone was a lifesaver.
Recovery is different for every body, so this list should be more of a guideline than a rule book. Follow your doctors orders, stay comfortable, sleep as much as you need, and always ask for help if you need it.
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